I'm after a little bit of advice/guidance. I am a 39 yr old female who has recently been diagnosed with familial hypercholesterolemia. For those who are not aware, this is a disorder which causes high cholesterol levels due to a genetic mutation and means the body cannot remove 'bad' cholesterol on its own and levels cannot be controlled by diet.
My total cholesterol is 7.7, LDL is 5.4 and HDL 2.3. I have been told by the lipid clinic I must go on 20mg of atorvastatin. Thing is I don't really understand why, and the consultant seemed too busy to answer me. I have no risk factors other than a family history of heart disease and the high cholesterol levels, I am otherwise fit and healthy.
My creatine kinase levels are at 63 u/l and lp/a at 22.5 nmol/l which are both well within normal levels and indicate I don't have heart disease.
So, my question is does anyone think I would be silly to reject the doctor's advice and refuse statins, or should I just do as I'm told and risk potential side effects?
Thank you in advance
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Kricam78
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It's a difficult one Arty, I'm not a risk taking type but that's probably why I'm having such concern about taking statins, from the little research I've done it seems I'd be at more risk of developing side effects from statins than developing heart disease by abstaining from them.
Rightly so - ask, research and challenge and then make up your own mind. There are other ways to manage cholesterol but you are not able to change your genes so it does need management. I would suggest visiting a qualified Nutritionist and see how you can be an agent in your own healthcare.
Thanks CDreamer, I did ask to be referred to a dietician as I'll confess I'm a little lost with all the conflicting advice regarding diet. Low fat, low sat fat, low carb, plant based, Mediterranean diet, low sugar, no processed foods, anti-inflammatory etc it's all a bit confusing and now have no idea what I should be eating!
I like to understand and believe we are the architects of our own destiny - certainly not going to do as you suggest, never was any good at ‘do what you are told’.
Keep on C dreaming.... Go with the data.... Its scarey but following medical advice based on data is the way to save your life. Of course there are exceptions... Out of sync cases... My grandad smoked all his life and died in his sleep at 94 years.... And it's good to question as you rightly say... But ignore evidence at your peril.
The data suggests a link with cholesterol and heart disease - a link is not a cause. Inflammation is the root cause - statins do tend to reduce inflammation as well, however, too many people have too many serious side effects from statins. You can reduce cholesterol with lifestyle changes unless your high cholesterol is genetic. That is not ignoring medical advice - it is knowing your numbers, understanding them, monitoring, taking an active part in your own well-being.
Whatever anyone decides it’s their choice, their body - not for a doctor to decide. We agree to disagree. I have had so many contradictory opinions and advice from various doctors I prefer my own - having weighed up the evidence and my own circumstances. My arteries are clear, (yes I know that), my BP is 105-120 systolic, my cholesterol numbers are highish but ratios good, I eat well, manage stress ( factor for inflammation).
Everyone’s circumstances differ and are unique, there is no one fit all solution so only handing out statins without first supporting lifestyle change is not health care.
It is confusing - I think start from scratch - avoid ALL processed foods, anything sugary or with added sugar, avoid all beige food - eat as varied a diet as possible rich in green leafy veg, a veg only counts as a veg if it is produced above ground - potatoes and root veg don’t count, eat one fermented food a day, eat stewed apples with skin on daily - pectin helps heal gut -
Otherwise eat the rainbow and aim for at least 50 different foods a week. Eat organic whenever possible and dechlorinise your drinking water (just leave in a jug for a few hours before using). There is carbs in everything - even broccoli but generally speaking we don’t need a lot of carbs unless we are an elite athelete so less than 10% of your plate - it will be 50% on most peoples. Oily fish once a week and white fish once week, ditto red meat, plenty of pulses,
The most difficult thing I find is eating out because we are so conditioned to not have a lot of veg on the plate but a lot of pasta, potatoes in whatever form, bread and cereal.
I have been advised to increase my salt, increase protein and fat but that is very individual. A Nutritionist is different to a dietician by the way - very different.
If you dont want to take then don't. But then the responsibility is all yours. If you are happy to accept that then go ahead. If you are going to spend the rest if your life worrying then think again. But if it was me I would get really fit and change my diet and live an impeccable life style. I would do everything possible to justify my decision. Or you could simply take them and be one of the millions with no side effects and get on with life.
Personally I would try them. See how I got on. If problems stop. But in the end its your decision. You will get conflicting advice here. I have been taking them for 6 years now with no problems. I started on a high dose and with diet and lifestyle changes have reduced the amount to a very low level. But i have had a heart attack and don't want another so maybe my circumstances are different.
Had I known 20yrs ago that by taking statins I would end up with kidney, liver and pancreatic impairment, neuropathy, myelin sheath depletion, type 2 diabetes, spinal stenosis, myositis, myalgia, premature cataracts, postural vertigo, tinnitus...all in exchange for a 4.5% reduced risk of heart attack! The fact remains that as yet there's not one piece of independent, non drug company sponsored research that shows any benefit from statins for women. Of course, it takes time to research. However, it cannot be wise to base such an important, life changing decision on hearsay or what I say or anyone else who has no ultimate responsibility to accept the consequences of what they advise. I will never again abdicate responsibility for my decision making.
Thanks Londinium, I'll ask my Dr's surgery if I can have a print out of my lab results when next there. Makes sense to be better informed before deciding whether or not to go with the statins.
Hi Concerned, thank you for the informed reply. Do you have high cholesterol yourself and have benefitted from the diet described and therefore don't take statins? The explanation given by my doctor as to what familial hypercholesterolemia was (though extremely basic!) was that I could eat lettuce leaves for the rest of my life and still have high cholesterol, and therefore an increased risk of heart disease - hence the wish to put me on statins.
I did alter my diet after it was first recognised that I had high cholesterol, admittedly I used the 'prescribed' diet of low fat, concentrating mainly on sat fat and increasing good fats rather than the Mediterranean diet but it only led to an increase in my TC and LDL
Krista, did you have the test that confirms you have familial hypercholesterolemia? My PCP is telling me I have a genetic link to high cholesterol w/o a blood test, but no one in my immediate family had a heart attack.
Thanks, but it's a 49 mins video. I'm aware of PHCUK. Dr Malhotra worked within the Nhs and also held private appts. Do you recall which contract he lost? That's all I was wondering.
Hi Krista I have the same situation. And no don't take the statin. If your inflammatory factors are good and your LPA and vldl is good (very low density lipoproteins) - which is indicative of plaque building. Also, get a heart scan to see if u have any plaque yet. In my situ I have zero plaque yet my chol. Has been off charts ever since 1st got it tested in 2o's. The statins may cause you more harm than good if this is case with you as well... I finally had an MD tell me this. The one who administered the EBT heart scan. Let me know if further questions I've been at this for a long time wttmy research I am 47 now.
Hi Janette, are you UK based? I just wonder if these tests are available on the NHS or is it something I'd have to seek privately. I have an appointment mid December with my GP and will speak to them about further testing before I make the decision to take statins (or not!).
No I live in U.S. but you can get a heart scan its likely out of pocket. An EBT (electric beam tomography) is the best kind if you can find access to one as its 33x more effective imaging and alot less radiation and worth every penny to find out. But a regular heart scan will do if you don't live in area where you have access to the EBT scan.
Best of wishes lmk if you've any other questions Iam happy to help!
And I just googled electric beam tomography heart scan UK. Looks like there's one at Southampton general hospital. There's likely more around just didn't look beyond that. But I tell you what even if you have to travel its worth it. Iam lucky to have one in Boulder but I know folks including my mom travel to get it done..
If not a regular CT heart scan is a good baseline too to show calcium plaque score if any..then you can get one every few years just to see if you are a plaque builder. Some folks can carry a high chol. And not build plaque. Others I've known can have that lower chol. Be a vegan and build plaque...
It’s a lot more difficult to get these tests via the NHS - depends very much on your Doctor & the relationship you have. My GP practice are very supportive but they will normally refer you to the specialism for tests- it’s also about whose budget the cost of tests come out of. Look up the NICE guidelines to see what may be possible - if they are in there - you stand a chance. You could also find a practitioner who is also qualified in Integrative Medicine - we have one in our GP practice who is much more open to discussion & will refer but they are very limited as to what they can do on the NHS & often tread a narrow line.
It’s a good commentary & critique on the arguments for and against statins from an informed viewpoint.
At the end of the day you need to consider your risks and balance them against the benefits of what you do or not do - which may include taking statins and/or making lifestyle changes.
Was there a genetic test done? If not, then the FH diagnoses is not necessarily valid - they just used a generic guideline - click here to see the guideline for yourself:
I had a triple bypass in 2015 (male, age 52) and my cardiologist diagnosed me with FH after the surgery.
He gave me a cocktail of pills including statins to take for life.
After a severe reaction to the statins, I made a dramatic change to my diet and lifestyle resulting in my weight normalizing for my height at - 155 lbs or 70 kgs. This was a 40 lb. weight loss.
During this process, I weaned off of the statins gradually over a 10 month period. Since October 2016 I stopped ALL medications that were given to me including the statin.
My cholesterol levels are all normal now and have been since that time.
FH is over-diagnosed. I encourage you to make the same changes and your cholesterol issues will likely disappear as well.
Statins won't necessarily thwart a heart attack as half of all heart attacks and strokes are caused by blood clots. To protect yourself, consider taking B-complex vitamins - specifically B6, B9 (Folic acid) and B12. Other helpful supplements are vitamin C (at least 3,000 mg per day), fish oil (Omega 3), and curcumin.
Your best move is to commit to a dietary and lifestyle change and re-test in 6 weeks to see the results.
I'm on the Mediterranean Diet which is essentially a whole-foods, plant-based diet. I avoid all sugar and simple carbohydrates. I walk daily for one hour and go to a gym to do some resistance training 2-3 days per week.
You can look up my historical posts to get more details about my journey, if you wish.
If you commit to dietary and lifestyle change and your cholesterol values don't improve, THEN you can consider going on a low-dose statin and reassess. I would consider a statin as a last-resort option.
By the way, most statin research was done on males so the benefit for females remains controversial.
Thank you SOS for the reply. No there was no genetic test, the consultant at the lipid clinic said that they would not do the genetic testing as I did not have children or plan to have children. I'm unsure whether I am able to force the issue, and I'd feel a little guilty forcing the issue since I know how strapped the NHS is for cash!
I did ask to be referred to a dietician since my attempts at following the NHS guidelines on diet for a month actually led to my TC levels increasing. Then when I researched diet further I caused myself much confusion and am now stuck knowing what to eat at all! As an aside though I am of a healthy weight and everyone who knows I have high cholesterol is very surprised since I am known for having a healthy diet. I have none of the other risk factors for heart disease, only high cholesterol and a paternal family history - though it is only the males in the family who have suffered early death, the women carry on into their 90's despite heart disease.
The term 'healthy diet' means different things to different people. Compare your diet to a whole foods, plant based diet with the complete elimination of sugar in all of its forms, including honey, agave, fruit juice, soft-drinks and desserts, as well as elimination of all processed foods.
In addition, the avoidance of all simple carbohydrate foods. Limited amounts of animal protein (no more than 3 oz once per day or ideally 4 times per week), mostly fish. Alcohol limited to 3-4 drinks per week.
Daily exercise also contributes greatly to LDL cholesterol reduction. However, I must emphasize one final point - Total cholesterol is of little clinical value. LDL-C is of limited clinical value. The most important measures of cholesterol risk is LDL-P (particle number). This can be found through an NMR Lipoprofile test or its proxy - Apo B.
So ask NHS for an Apo B test, otherwise get one done privately. The NMR Lipoprofile can also be done privately.
Here is the conclusion of a medical study on this subject:
"For women with discordant LDL-related measures, coronary risk may be under or overestimated when relying on LDL-C alone."
Familial hypercholesterolemia is a genetic disease it seems to have been redefined as those with higher cholesterol than “normal” look at all the numbers Ken Sikaris has some very interesting lectures on YouTube which may help you understand the numbers
When I was wondering about what to do about a medication my 21year old granddaughter said "Do what you feel comfortable with and remember you can change your mind." Another tip is to look up NNT (number needed to treat) and put in Statins. Interesting how many people have to take it for one to be helped. The number harmed is greater that those who are helped! A friend has suffered kidney damage due to statin. They are powerful drugs.
I never used words you list. My dad and Big sis are doctors. They told me data indicates recurrant problems with heart Conditions occur when patients don't take their medication. Over 70% of cases. So if you do as instructed you have a better chance. I realise it's hard for some to separate the emotions from the maths. Of course there are exceptions.... No one is the same... But don't be fooled.
Or from having heart problems!! Try to give a balanced argument... I ain't saying ignore your instincts... Or don't question things... Just follow the data... I had an MI... nearly died... Got sent fitted... Statins keep the plaque at bay... Its good to research... But don't ignore medical advice... 70% of those who do... End up worse off.
This summary of what Cholesterol does in the body may help you make the right decision. In my view this has been the most successful marketing ploy by the pharmamafia.
Cholesterol is in every cell of the body and so much is needed for proper body function that it would be impossible to eat enough of it in your diet to satisfy your daily cholesterol needs. To meet this gap the liver manufactures four or five times as much cholesterol as you ingest. The liver adjusts the level in relation to the amount of cholesterol that you eat, so if you ingest high levels of cholesterol then the liver produces less to compensate.
Cholesterol is needed in the body for:
Brain synapses. The vital connections between nerve cells in the brain, and elsewhere, are made almost entirely of cholesterol. It is essential for proper neurological function and plays a key role in the formation of memory and the uptake of hormones in the brain, including serotonin, the body’s ‘feel-good’ chemical.
Vitamin D. A very important vitamin, not only needed to create healthy bones, but now known to be protective against a number of cancers. Vitamin D is synthesized from cholesterol by the action of sunlight on the skin.
Cell membranes. All cells in the body need cholesterol in their cell membranes. Without it they would disintegrate, as cholesterol provides structural integrity.
Sex hormones. Cholesterol is a building block for most sex hormones.
Bile. Cholesterol is a key component of bile salts, which are released from the gall bladder to help with food digestion, especially fats.
Repair. Cholesterol is the body’s repair substance: scar tissue contains high levels of cholesterol.
Extract from ‘The Great Cholesterol Con’ by Dr.Malcolm Kendrick.
Cholesterol is one of the most important substances in the body. We cannot live without it, let alone function well. The pernicious diet-heart hypothesis has vilified this essential substance. Unfortunately, this hypothesis has served many commercial and political interests far too well, so they ensure its long survival. However, the life of the diet-heart hypothesis is coming to an end as we become aware that cholesterol has been mistakenly blamed for the crime just because it was found at the scene.
Extract from the Weston Price Foundation.
So you can see that a low level of cholesterol is not ideal for good health, no matter what your GP may tell you. Remember we are all customers now, not patients. Treatment, whether you need it or not, generates profit and there is no profit in good health.
Ha! Might as well have...My PCP thinks since my LDL is always high, that means it must be genetically-linked. My former PCP told me I didn't need to take statins, since my cardiac calcium score was zero and the CRP is normal.
That's my feeling, too. My Trigs are elevated--went from 126 to 167 in a year, but my HDL is good at 53. Think I'm still ok?
I took 3 different statins 10 years ago and had debilitating muscle pain. I don't want to repeat that experience. I'm also on Eliquis for a blood clot in my lung (after prolonged bed rest for the flu) and prefer not to take any more meds. Hate that I have to take a blood thinner.
Exactly! The thing to do here, as an adult, is do your own research: read widely about the pros and cons, and also look carefully if those who advocate statins have some sort of vested interest. By that I mean specifically, contacts with pharmaceutics companies or the like. I am convinced that the negative effects of statins are far more widespread than is advertised.
You simply cannot trust American medical gurus....where health is directly linked to profit. Best to read publications like the Lancet, BMJ etc...peer reviewed by experts and independent of comoany funds!!
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Being treated for FH but no marker gene found when tested and have stopped statins
To statin or not to statin - that is the question?
High cholesterol levels and 26 yrs old
Given in to statins!
Help!! advice needed, total cholesterol levels 9.1!!